Down Syndrome Network, Inc.

Down Syndrome. Knowledge, Support & Advocacy

aka DSNetwork   |   Tempe, AZ   |  www.dsnetworkaz.org

Mission

Our mission at DSNetwork is to educate, support and advocate for those in our community touched by Down syndrome.  DSNetwork is committed to providing a balance of life to those touched by Down syndrome.  DSNetwork will achieve this goal through an open, supportive and collaborative network that will connect individuals and families with needed resources and information.

Ruling year info

2002

Executive Director

Louise Bowden CFRE

Main address

1445 E Guadalupe Road, STE 103

Tempe, AZ 85283 USA

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EIN

61-1409048

NTEE code info

Down's Syndrome (G25)

Developmentally Disabled Services/Centers (P82)

Family Services (P40)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

When a parent learns their child has Down syndrome, the news can be overwhelming. Questions of how, why, what, and a roller coaster of emotions take over. From first getting the diagnosis through school-aged years and beyond, individuals with Down syndrome and their families face a wide-range of challenges. They find themselves on a wonderful, but complicated journey to learn how to best support and nurture their loved ones. Individuals with Down syndrome are bright and creative and with every challenge they are given, they provide laughter and joy to those around them. Down Syndrome Network assists families every step of the way.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Parents and Schools in Partnership

This educational program builds collaborative relationships between Down syndrome Network, parents and the 50 largest Arizona school districts to affect positive outcomes for students with Down syndrome.  We provide quarterly breakfasts with nationally recognized speakers to create a community of professionals with the latest tools to improve the lives of students with Down syndrome.

Population(s) Served
Adults

This fun, interactive program visits classrooms of typical students.  The children experience a day in the life of a child with Down syndrome/special needs, to raise awareness and advocacy for all children.

Population(s) Served
Children and youth

Provides current information and personal connections for families, educators, therapists and medical professionals on best practices for achieving developmental milestones and how to provide the best education for individuals with Down syndrome.

Population(s) Served
People with intellectual disabilities

When a parent finds out their child has Down syndrome, either pre- or postnatal, DSNetwork personally connects with them to provide current information and parent mentoring opportunities for them to learn and navigate through the very complex process of how to care for their child.

Population(s) Served
Parents

A group for parents and their young one with Down syndrome. The children play together while the parents network, share knowledge and experiences, and support each other. Club Xtra assists in helping our children reach their full potential while making lasting friendships.

Population(s) Served
People with intellectual disabilities
Parents

Adults with Down syndrome are now reaching old age on a regular basis. Aging adults with Down syndrome, along with their families and caregivers are provided accurate information and education about what to anticipate as part of growing older so that they can set the stage for successful aging.

Population(s) Served
Seniors
People with intellectual disabilities

A program for youth with Down syndrome (ages 8-17). The program provides an opportunity for fun social activities, educational opportunities, and friendships for tweens and teens with Down syndrome. The program focuses on increasing self-confidence in a safe and supportive environment, social, prevocational, and life skills to help each tween and teen achieve their full potential.

Population(s) Served
Adolescents
People with intellectual disabilities

Connecting Grandparents, Siblings & Families through a networking group that offers a safe place to share the joys and challenges of raising a child with Down syndrome. At the groups families who have a loved one with Down syndrome, learn and share information and ideas.

Population(s) Served
Families
People with intellectual disabilities

Moms’ Night Out – A program for women who have a child with Down syndrome. Events create opportunities for mothers to gather with friends, share and connect, and foster friendships in a supportive and fun environment.

Dads Appreciating Down syndrome, who have a loved one with Down syndrome come together once a month to assist and support the fathers through fellowship and action.

Population(s) Served
Parents
People with intellectual disabilities

Where we work

Accreditations

Points of Light certified as a Service Enterprise 2019

Awards

Innovations in Alzheimer's Caregiving Award in the category of Diverse/Multicultural Communities 2019

Family Caregiver Alliance

Affiliations & memberships

National Down Syndrome Society 2021

National Down Syndrome Congress 2021

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of free participants in conferences

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, Seniors, Young adults

Related Program

Aging Matters for older adults with Down syndrome

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of youth receiving services (e.g., groups, skills and job training, etc.) with youths living in their community

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth

Related Program

Tweens & Teens UP! (ages 8-17)

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Tweens & Teens Up with Down syndrome

Number of children with a disability supported to live at home

This metric is no longer tracked.
Totals By Year
Population(s) Served

Infants and toddlers, Parents

Related Program

Club Xtra for KIDS (ages 0-7)

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of mentors recruited

This metric is no longer tracked.
Totals By Year
Population(s) Served

Infants and toddlers

Related Program

New Parent Outreach

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of adults with disabilities receiving sufficient social and emotional support

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, Young adults, Parents

Related Program

Aging Matters for older adults with Down syndrome

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

To provide information to assist people with Down syndrome and their families to better understand and arrange for services.

To provide networking opportunities for people with Down syndrome and their families.

To promote greater public understanding of people with Down syndrome and the syndrome itself.

To effect change in policies and behavior to improve services, education, employment and overall quality of life for people with Down syndrome and their families.

The board of directors and staff developed a strategic plan for the next five years.

1 Year Goals:
• Find volunteer coordinator
• Increase partnership/involvement with ASU (i.e. internships)
• Increase media outreach (pitch more human interest stories to neighborhood publications)
• Partner with Emily Center as a resource
• Expand young adult group
• Develop resource/social program for older adults (35+)
• Increase support for siblings and grandparents
• Add new parent meetings

3 Year Goals:
• Incorporate comprehensive programs to better serve all ages
• Develop a comprehensive program for older adults (35+)
• Offer continuing education courses to professionals for programs
• Offer Spanish-speaking events and literature
• Create financial sustainability via fundraising, grants and development plan (in progress)
• Provide transportation services for adults with Down syndrome

5 Year Goals:
• Have own office/service center
• Develop strategic partnerships
• Partner with groups/medical professionals to create medical care center for adults with Down syndrome

The Board's involvement in strategic planning is ongoing. The board provides direction and resources. The board provides guidance on goals and objectives for the next fiscal year so the strategic plan is linked to the budget. Board members are routinely briefed regarding the progress of new programs and ongoing initiatives. Board members participate in an annual retreat and receive training on board member responsibilities and matters that affect the agency such finances, philanthropy, and community advocacy issues.

- Hired a full-time volunteer & program coordinator
• Successful all-day conference on growing older with Down syndrome with foremost experts in their field presenting on topics specific to our aging adults with Down syndrome.
• We expanded the program for Tweens & Teens with Down syndrome
• We are developing resource/social program for older adults (30+)
• We started monthly group meeting for new parents and their little ones.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    People with Down syndrome, their families, and those who provide supports.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Since COVID, we surveyed the people we serve to ask how they would like to continue to participate in programs. Consequently, we now deliver purposeful programs to the individuals who participate in our programs by providing virtual group gatherings 2-3 times a month.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    We keep our program participants engaged, socially and physically active. It is critical to keep them engaged and active in order to avoid the feeling of isolation and lack of physical activity. We safely deliver the activity materials, food, and whatever else is needed to the participant's homes so their virtual experiences are meaningful.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

Down Syndrome Network, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Down Syndrome Network, Inc.

Board of directors
as of 5/19/2021
SOURCE: Self-reported by organization
Board chair

Jill Nico

Estrella Mountain Community College

Term: 2015 - 2023

Jill Nico

Estrella Mountain Community College

John Escobar

Cassie Petre

Nelson Pediatric

Chandra Williamson

Andrea O'Brien

Susan Marks & Advocates PLLC

Andrew Schmidtke

Freedom Financial

Jessica Avena

Self-Advocate

Gonzalo Castaneda

Community Leader

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 05/19/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 02/23/2021

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.